T3 trail offer retracted: Hi all, so my... - Thyroid UK

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T3 trail offer retracted

Timbutdim profile image

Hi all, so my endocrinologists has taken away the offer to retrial T3 again as last blood draw showed improvements. Lol

In the letter he has sent to the gp he has mentioned he has asked me to do a dio2 so I guess he has not received any results from regenerus labs. He does mention my scan as requested shows thyroiditis but no modules or no concerning features.

So blood results which removed T3 trail as follows.

fT4 19.3 pmol/L fT3 4.4 pmol/ L and TSH 1.67 mU/L

So he recommends a dose reduction of 25mcg every other day, so a continuous dose of 125mcg Levo.

Just as I was starting to tolerate 150mcg every other day??

Can I refuse to drop the 25mcg on alternative days??? Just I need that bit extra???f

Letter states weight is stable but at the time of phone consult I had gain a stone in weight?? Didn't realise I had gained so much but did mention I had gained.

Letter states no o formation on liver function or FBC details so have phoned to to request print out of results.

39 Replies
SlowDragon profile image
SlowDragonAdministrator

What’s the range on Ft4 and Ft3 results

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

How long have you been on 125mcg and 150mcg alternate days

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Did you do Dio2 gene test before?

If so Regenerus require you to have consultation with DNA specialist on phone before they send you the results

Timbutdim profile image
Timbutdim in reply to SlowDragon

No ranges were given on letter.

The test was done during the afternoon. I had taken usual dose of Levo at approx 6-7am that same morning.

Yes as far as the packaging goes I take 100mcg Almus 25/50mcg wockhart.

I have no recent blood result for vitamins, liver function ect have phoned professors secretary and asked but waiting for reply.

I have done DIO2 gene test but they were sending results to the professor who requested I have the test done but in the letter I received today dated 20/07/2021 no mention of him receiving my results via regenerus labs.

My results were being sent directly to my specialist so did not require addition consultation via phone.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

So you need to chase up Dio2

Request the ranges on these most recent results. (You’re legally entitled to copies of your test results and ranges. Results without ranges are pretty meaningless )

Recommend getting retested privately testing early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Likely to see higher TSH and lower Ft4

Then you can send results to endocrinologist and refuse to reduce dose

Essential to test vitamin D, folate, ferritin and B12 annually minimum

We need OPTIMAL Vitamin levels for good conversion of Ft4 to Ft3

Vitamin D at least around 100nmol

Folate and ferritin at least half way through range

Serum B12 at least over 500

Active B12 at least over 70

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Timbutdim profile image
Timbutdim in reply to SlowDragon

Just had call from the professor in response to e mail, he received DIO2 test results are I do not have the variant I have normal phenotype.

The ranges are T4 range is 9-26

T3 range is 2.8-7.1

Liver functions all ok

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

TSH daily variation

healthunlocked.com/thyroidu...

Very important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Median TSH graph in healthy population is 1.-1.5

healthunlocked.com/thyroidu...

Timbutdim profile image
Timbutdim in reply to SlowDragon

Personally I've never been told by any healthcare professional that the timing of a blood test is important. Not once has any healthcare professional stated not to take my medications 24 hrs before a blood draw. When they want specifics they usual say, fasting on so on.

TSH 1-1.5 in healthy population is lower than I was expecting. But in the healthy population they would have there bodies own thyroid hormones that work in harmony with the rest of there endocrine system. People with thyroid disease are not healthy people and dump usual in one dose an entire day's worth of hormone in there bodies which runs havoc with the rest of the endocrine system. I'm not talking blood results here I'm talking physical symptoms like heart irregularities, skin changes, weight changes, brain function changes, mood and general well being changes. Why do some GPs offer anti psychotics after levothyroxine therapy , statins for cholesterol changes, beta blockers for heart issues.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Personally I've never been told by any healthcare professional that the timing of a blood test is important. Not once has any healthcare professional stated not to take my medications 24 hrs before a blood draw. When they want specifics they usual say, fasting on so on.

Vast majority of medics are totally unaware of importance of timing of blood tests

A few enlightened endocrinologist will always advise testing early as possible in morning and last dose levothyroxine 24 hours before test

Yes taking levothyroxine in single dose via gut is nowhere near same as slow steady release of thyroid hormones from thyroid gland directly into blood through the day

You can try splitting levothyroxine…..100mcg at bedtime….and 25mcg or 50mcg at least an hour before breakfast or tea/coffee ….can give higher TSH or reduced symptoms

Timbutdim profile image
Timbutdim in reply to SlowDragon

Yes I have tried Levo at bedtime and felt better as most intense brain effects have lessened. Strangely enough I usually felt best just befor I take the next dose.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Many people find taking at bedtime more convenient and possibly more effective

Splitting dose levothyroxine can be helpful too, especially when initially increasing dose levothyroxine

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning:

delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Timbutdim profile image
Timbutdim in reply to SlowDragon

Thanks SlowDragon, will do.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

SeasideSusie profile image
SeasideSusieAdministrator

so my endocrinologists has taken away the offer to retrial T3 again as last blood draw showed improvements.

Assuming I haven't misunderstood anything - so something that works, shows improvement and you feel better for it gets taken away because it .... erm.... works 🤔 🙄 That's the biggest load of nonsense, probably the most stupid thing I've read on the forum this week. On what planet do some of these doctors live?

Those results are prior to T3 retrial, those results are from 125/150mcg levothyroxine alternative days. Now he has seen these results he has wrote to GP and said 125mcg no 150mcg alternative days. And no T3 trail. Sorry my grammar is not great.

SlowDragon profile image
SlowDragonAdministrator

fT4 19.3 pmol/L

fT3 4.4 pmol/ L

TSH 1.67 mU/L

Please add ranges

But These results don’t suggest over medication at all

How much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo

Obviously that’s a guideline….some need more….some less

Timbutdim profile image
Timbutdim in reply to SlowDragon

No ranges given. My weight at blood draw and last blood test was approx 84kg.

I am now back down to approx 75kg. After gaining a stone on some other medication which I no longer take.

My brain was feeling well, on 125/150 mcg butwas feeling on the hot side and with an increased hair loss than when taking just 125. However I could function and have good energy every normal energy expenditure day? Days when I cycle still resulted in exhaustion for 24-36 hours followed by massively increased hair loss but then ok.

Tim the blood results that got me my trial were:TSH 0.19 (0.55 - 4.78)

FT4 19 (10 - 25) 60%

Ft3 4.5 (4.0 - 7.0) 16.67%

I was on 100mcg levo at the time. The endo felt we had given levo a fair trial. what swung it was the consistently under range TSH which indicated to her that I was not needing more levo even though FT4 was not near the top of range.

I cannot understand why he would recommend a dose reduction based on your labs.

Timbutdim profile image
Timbutdim in reply to Lalatoot

I was feeling overly hot and sweaty and had an increased hair loss but endocrinologist did not have that information as those symptoms are new and could be down to weather and or increased energy output due to improved frees levels. . Still have constipation on the dose, extremely dry hat/skin.

So I'm thinking 125mcg reduced energy out put,reduced hair loss, and increased recovery time after a day's cycling. Not that I've got the choice to make lol, well I've have T3 only pls😂.

i cant see from your posts ,( forgive me if i missing what's under my nose )

What were last result's on (?) dose of levo before you did the T3 trial ?

What dose T3/T4 did they give you , are there any blood results from that ?

then you stopped/couldn't get T3 and went back to 137.5mcg Levo ? (125/150)

....are these the results from being on 137.5 for at least 6 weeks ? (fT4 19.3 / fT3 4.4 / TSH 1.67 )

And on the basis of these, the endo said reduce to 125mcg Levo and you can't have another trial because 'they've improved ' .....

Improved from what ?

(i was trying to find what dose /result you were on when they gave you theT3, but can't find any dates in your answers

"I'm just returning my tsh to within range after being on another hormone which sent my tsh to 24 I'm usually ok with brain until tsh very low?? Funny brain felt OK at tsh 24"

"usually on 125mcg T4 daily with no contraindications or break in taking them my TSH usually at 0.0 and at that point I feel nuts, totally nuts and I still get symptoms of under medicated like constipation dry skin hair fatigue I just can not tolerate my TSH that low as I feel constantly twitchy and unsettled and being in public places is like being in hell If I take less T4 I can not open my bowels and struggle to get out of bed i seem to be doomed either way . Last check my TSH was 6 and my brain still feels good I will know when it gets to the 0.0 again without any need for bloods.. "

Timbutdim profile image
Timbutdim in reply to tattybogle

Not sure of exact results but the usual results at that time were below range TSH 0.0? Upper range T4 low range T3.

When I trailed T3 was on 10mcg a day plus usual T4. 125mcg.

Sorry I have no results from the trail.

Those results latest results would cover just under 6 weeks. 125/150mcg.

In March I was taking another medication which interacted with my TSH. My TSH was 24 stopped the other medication I was taking then TSH went to about 6 and it was that result which the T3 trail was offered again but last blood draw was ok.

My TSH at 1 I'm ok.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Those results latest results would cover just under 6 weeks. 125/150mcg.

TSH 1.6 is possibly too high and would be higher if tested early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Bloods should be retested minimum 6 weeks after any dose change or brand change in levothyroxine

Many members find it better to wait 8-10 weeks before testing to get higher and more representative TSH

Timbutdim profile image
Timbutdim in reply to SlowDragon

Next blood test should be more accurate of dose and I will bear in mind time of draw when booking a slot.

Once the GP takes on full responsibility of my thyroid how often will they check bloods. I'm a bit concern as my GP surgery did not contact me when my TSH was 24 and I was looking awful. Another woman who lives opposite me suffers cold and her meds have not changed from 75mcg Levo despite her freezing cold all the time.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Thousands upon thousands of U.K. patients test privately

In theory you should get tested every 6-8 weeks until thyroid results are stable and unchanging. TSH around 1 and Ft4 and Ft3 roughly 50-60% through range….and all four vitamins optimal

A) GP will typically only test thyroid once a year

B) NHS usually only tests TSH….obviously completely inadequate

C) as you have learnt today, extremely important to test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.

D) any brand change, bloods should be retested 6-8 weeks later. Different brands are not interchangeable as not bio identical. 100mcg of one brand will give different results than 100mcg in different brand

E) important to test folate, ferritin and B12 at least annually. Common to need to supplement

F) test vitamin D twice year when supplementing. NHS will only reluctantly test once every 2 years

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Another woman who lives opposite me suffers cold and her meds have not changed from 75mcg Levo despite her freezing cold all the time.

Extremely common to be left months/years/decades on entirely inadequate dose

She needs to get FULL Thyroid and vitamin testing done…..

Timbutdim profile image
Timbutdim in reply to SlowDragon

I did say that that cold feeling was a sign of being under medicated but not sure if she seen her GP or just puts the heating on higher.

SlowDragon profile image
SlowDragonAdministrator

Letter states weight is stable but at the time of phone consult I had gain a stone in weight?? Didn't realise I had gained so much but did mention I had gained.

How much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more ……some less

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Ft4 19.3 range is 9-26

FT3 4.4 range is 2.8-7.1

So Ft4 is 61% through range

Ft3 only 38% through range

Most people on levothyroxine need Ft3 at least 50% through range

If you redo test, making sure it’s 24 hours between last dose levothyroxine and test Ft4 likely to drop

TSH would be higher tested in morning

As it is, results show even on this test that you have room to increase levothyroxine to 150mcg daily

Timbutdim profile image
Timbutdim in reply to SlowDragon

The problem was when I first tried to take 150mcg alternative days my vision was diabolical, severely blurred and I looked like a crazy person. That was when my TSH was already below range. So couldn't really tolerate that dose to get my fT3 to a nice level. So stuck at 125.

When the receptionist told me a while back my bloods were OK and I asked what was my TSH she said 24 so I thought I'd stop other medication which was causing interactions with my Levo and try again to tolerate the 150 days to get my TSH quickly into range and I seemed to tolerate the 150 days when my TSH was high. Another variable could be that now I am taking ezertemibe and ashwagandha which may make the 150 tolerable but I will see when my TSH gets below range if I can still mentally tolerate that dose and then I will know.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

So stay on 125mcg and 150mcg alternate days and get FULL thyroid and vitamin testing done….ensure you test early Monday or Tuesday morning, before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Always get same brand levothyroxine at each prescription

Stop taking any supplements that contain biotin a week before test

Come back with new post once you get results

Timbutdim profile image
Timbutdim in reply to SlowDragon

Biotin??? Why.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

We post about BIOTIN all the time

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Timbutdim profile image
Timbutdim in reply to SlowDragon

First link says 100- times daily recommended dose so if you taking 7000 mcg it may be an issue, didn't quite understand what the issue was??

Second link tells me a lot of thyroid patients need help with skin and hair so are taking biotin. My opinion thyroid replacement affects sex hormone levels and this can be seen by skin thinning? Wrinkling and dry hair.

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

Many, many thyroid patients take vitamin B complex with biotin in or a separate biotin supplement

It’s important to stop all supplements that contain biotin for a week before blood tests as labs have said any biotin can falsely affect test results

Timbutdim profile image
Timbutdim in reply to SlowDragon

Don't we flush out water soluble vitamins within 24 hours???

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

More likely 2-3 days.

Private testing companies say stop biotin/vitamin B complex 4-5 days before testing

Personally I then supplement separate folate and B12 during week before test

Timbutdim profile image
Timbutdim in reply to SlowDragon

Isn't folate and b12 same thing? Are they any good for skin and hair??

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

No folate is B9

B12 is B12

healthline.com/nutrition/vi...

There are eight B vitamins — collectively called B complex vitamins.

They are thiamine (B1), riboflavin (B2), niacin (B3), pantothenic acid (B5), pyridoxine (B6), biotin (B7), folate (B9) and cobalamin (B12).

Though each of these vitamins has unique functions, they generally help your body produce energy and make important molecules in your cells (1).

Aside from B12, your body cannot store these vitamins for long periods, so you have to replenish them regularly through food (1).

Thyroid patients often low in folate, B12

Also Hashimoto’s patients often low in Thiamine

thyroidpharmacist.com/artic...

Generally a good quality vitamin B complex will help improve all B vitamins

Timbutdim profile image
Timbutdim in reply to SlowDragon

Thanks for the links read through some but feeling tired now so I'm going to get a little rest but will read more from those links when I feel fresher. Night SlowDragon

Timbutdim profile image
Timbutdim in reply to SlowDragon

Really enjoyed your links I've learned a lot of useful stuff and have made notes . I have heard of Isabellla wenzt, very enjoyable read with lots of extra links for Hashis.

I have felt more tired than usual and then realised I had ran out of my B complex, must remember to get some adapt.

I was offered a B12 shot for £42.00 by a private doctor and after reading the absorption related issues with Hashis was thinking do they do a B complete injection?

SlowDragon profile image
SlowDragonAdministrator in reply to Timbutdim

No don’t think so

Many thyroid patients take vitamin B complex and separate sublingual B12 tablets as well….

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